gamer changer which got you remission

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st_uc
Regular Member


Date Joined Mar 2014
Total Posts : 186
   Posted 6/17/2017 9:48 PM (GMT -6)   
What was your gamer changer which got you remission

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 6/17/2017 10:35 PM (GMT -6)   
First, remicade, then 5 years later adding azathioprine (Imuran) for a year. I also use turmeric and krill oil but don't know to what extent that helps, if at all.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me sick. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms, and turmeric, krill oil, and Methyl B12 daily. (Discontinued CoQ10 d/t terrible heartburn).

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3881
   Posted 6/17/2017 10:50 PM (GMT -6)   
no game changer. meds and a couple years.

st_uc
Regular Member


Date Joined Mar 2014
Total Posts : 186
   Posted 6/17/2017 11:08 PM (GMT -6)   
DBwithUC : WHich medicine is keeping you from flaring?

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 1893
   Posted 6/18/2017 5:09 AM (GMT -6)   
Uceris and 6MP
MODERATOR-UC FORUM
58, female - diagnosed with moderately severe proctitis/mild diverticulosis
Lialda - one a day
6mp - 50 miligrams
VSL#3 DS - 1 pack a day or as needed
Zocor - 40 mg
Calcium with Vitamin D
Glucosamine
Magnesium
B-Complex

"Fly under the radar" - Dad -

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 5571
   Posted 6/18/2017 5:32 AM (GMT -6)   
Diet modification plus mesalamine enemas plus VSL#3 plus oil of oregano plus turmeric plus clay water plus Benadryl. Diet has been the biggest positive of all and the only thing that is continuous, the other aids/supplements come and go as needed.

I continued taking RX meds (Balsalazide) even though they (and other oral RX over the years) did nothing for my UC symptoms. 1 year used high dose turmeric capsules instead of RX but switched back to RX due to side effects of turmeric.
Diet=gluten-free modified Paleo+potatoes+low dairy, low grain, no seafood (IBS),low fiber diet
In remission April 2010 after 10 years of UC after no remission ever
gluten-free =bleeding stopped, dairy-free (less IBS) started remission path+food diary
daily: Balsalazide 750mg and 2 Ginkgold tablet
rarely: VSL#3, mesalamine enema, Canasa supp, Citrucel

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 3035
   Posted 6/18/2017 5:48 AM (GMT -6)   
My first major flare was in 2010. I had just figured out that I was allergic to Balsalazide and Asacol, probably all mesalamines. Didn't know much as food modification at that time but one poster here, Christine1946, said she would flare whenever she ate crab cakes. I had been eating clam chowder soup almost every day from a local salad bar. I noticed an immediate improvement when I stopped eating the soup, and minor relapses whenever I sampled shellfish. That made me a true believer in diet.

Then another poster, Tap, said that he found powdered psyllium seed, as opposed to the husk, to be very effective. I read somewhere else about taking probiotics. The forum also had posters such as imagardener2 who said it was possible to achieve remission without meds. That became my goal, to stay healthy without meds since I couldn't tolerate the milder meds and I really didn't want to be dependent on the big guns.

I feel I can manage this disease for months or even years at a time as long as I watch what I eat at take certain supplements that seemed to help. I still schedule a colonoscopy every few years and so far my colon is clean.
Male, born 1951, DX IBD Feb08. No meds, allergic to Mesalamine. Food diary instead of SCD or Paleo.
When needed VSL#3DS sprinkled over powdered psyllium seed is very helpful.

Lactobacillus Reuteri (NCIMB 30242), Culturelle, Saccharomyces boulardii.
Fish oil, curcumin, extra D3, magnesium, multivitamin, glutamine when gut repair needed.

Resistant Starch and lots of fruit & vegetables (but no cruciferous), No Gluten, no soda, no HFCS, no xylitol or sorbitol, no trans fat, no shellfish, no carrageenan, no GMO foods saturated with Roundup.
Nature created all of the locks, therefore Nature has all of the keys

Deacon Blues
Regular Member


Date Joined Oct 2006
Total Posts : 282
   Posted 6/18/2017 7:19 AM (GMT -6)   
Azathioprine/Imuran hands down!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10527
   Posted 6/18/2017 7:27 AM (GMT -6)   
Remicade without a doubt!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 75mgs 6MP, 4.8g Lialda, and rowasa

I swore to myself that once i was off of prednisone that I'd burn both the pills and bottle with great hedonistic enjoyment: booze, food, and dance. And if I ever need a colectomy... ;-)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15097
   Posted 6/18/2017 8:40 AM (GMT -6)   
surgery.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29629
   Posted 6/18/2017 9:55 AM (GMT -6)   
In my signature....5ASA oral and retention enemas.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 181
   Posted 6/18/2017 3:12 PM (GMT -6)   
Xeljanz
Spouse diagnosed with UC in 2013. Remicade, humira, Entyvio did not work. Only thing that worked was prednisone. March 2016 started Xeljanz. In remission within 2 months. Working with endocrinologist to get off prednisone, and neurologist to deal with neuropathy in feet that appeared with prednisone taper. Still tapering off prednisone .5 mg every 4 weeks. Developed osteoporosis due to steroids

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23547
   Posted 6/18/2017 9:28 PM (GMT -6)   
I've been on Remicade little over 5 years. Reached a true clinical remission after being on it for a year. I just had a c-scope on Tuesday and nothing has changed so I'm still in remission. I've had UC for 25 years, never hit remission until I started Remicade.
SHERRY
Moderator-Allergies/Asthma, Alzheimer's, IBS, Co-moderator-UC
Diagnosed Left sided UC '92 - meds: Apriso, Remicade) Unable to tolerate MOST mesalamines* Currently in Remission, IBS, Diverticuliar Disease, Fibro, Sacroiilitis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry eye syndrome (which caused a blockage -had the DCR surgery 2015 success!), allergies-Zyrtec

brucen36
Regular Member


Date Joined Mar 2014
Total Posts : 253
   Posted 6/18/2017 9:52 PM (GMT -6)   
SCD
Male mid 40s.
SCD only, since 2006.
Since 2015: mesalamine 4.8 g/day and salofalk enemas as needed.
Psyllium seed powder 1 tbsp at night
Goat milk kefir

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 184
   Posted 6/19/2017 6:52 AM (GMT -6)   
Humira
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Nov 2013
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid; Hydrocort Enemas (as needed); Prilosec; Iron; Plaquenil; Vit D, Humira
Past Meds: Lialda and Imuran - adverse reactions to both, discontinued

Bloom93
Regular Member


Date Joined May 2012
Total Posts : 294
   Posted 6/19/2017 6:55 PM (GMT -6)   
Fecal transplant + SCD diet
Daughter 22 yrs- UC Pan colitis.-In Remission achieved by 5 home fecal transplant in 2011.
Diagnosed in May 2011
SCD diet (2011-2013)
Occasional sugar , milk and outside foods(2013- 2014)
Normal diet - 2015
Current meds- Lialda- 2 tabs a day.
5 Home fecal transplants for C.diff in dec 2011.

st_uc
Regular Member


Date Joined Mar 2014
Total Posts : 186
   Posted 6/21/2017 5:58 AM (GMT -6)   
Anyone else with alternative method?

ElpisUnbreakable
Regular Member


Date Joined May 2015
Total Posts : 468
   Posted 6/21/2017 6:40 AM (GMT -6)   
remicade, VSL, green tea extract. Hard to know which got me into remission but whenever I cut back on the VSL or green tea extract, I start to get D. I think the VSL controls my IBS and the green tea and remicade controls my inflammation.
Remicade every 4-5 weeks.

Past medications: Asacol HD 800mg, Pred, Uceris, Imuran,
Current: Remicade, Canasa
Aloe Vera Enemas
Gluten Free low carb diet, Green tea extract
VitD, Fish Oil, Grape Seed Extract, Adrenal Fatigue, VSL #3
Hope. Lots of Hope

st_uc
Regular Member


Date Joined Mar 2014
Total Posts : 186
   Posted 6/21/2017 8:19 AM (GMT -6)   
Which brand of green tea extract do you take? I want to try too.

CGK1998
Regular Member


Date Joined Dec 2014
Total Posts : 301
   Posted 6/21/2017 11:25 AM (GMT -6)   
Isatis Cooling
F, 39 DX Severe Pancolitis in 1/2013
Flared 11/14-12/14, 4/15-7/15
Diet - Tried every one in the book! Gluten free and whole foods, limited dairy and FODMAPs
Meds - Prednisone during flare, Apriso and Canasa for maintenance
Supplements - Isatis Cooling and Grape Seed Extract (these two were my game changers), VSL#3, Turmeric

Charlie3
Regular Member


Date Joined May 2013
Total Posts : 293
   Posted 6/21/2017 12:05 PM (GMT -6)   
Entyvio! On it for 3 years now . Get infusion every 8 weeks
Still have to watch my diet and had a severe flare last Jan . When my hubby of 64 years passed away after a one month finding of cancer
I am fine now , miss him , but I try to stay heathy for him
I promised him I would
Joan 84 yr old great grandmother
Dxed with UC in 2012 failed all medications then put on Entyvio 2 years ago
Much improvement not in remission by any means but under control
Supplements. turmeric , multi vitamin , Reuteri pearls , DOA as needed

climbsnowgirl
Regular Member


Date Joined Nov 2016
Total Posts : 73
   Posted 6/21/2017 2:08 PM (GMT -6)   
First remission : Mezavent/Lialda + Cutting dessert, red meat and processed food.
Second one : Stelara

Alternative method : Cabbage juice didn't put me in remission, but it makes blood and pain disappear completely in 2 days. I found all the info about it on HealingWell. I tried many other alternative medecine and I would say it is the most impressive on me!
28 yrs old, Mtl (Canada)
Dx UC 2005 but DX Crohn March 2017. Flare frome 2005 to 2009. Remission from 2010 to 2015.
Prev. med : Imuran, Pentasa, Mezavent, Enemas, Salofalk, Remicade, Vanco
Since september 2015 : 2 salmonella, 2 c-diff and 2 hospitalization for those.
Current medication : Pred 5mg, Stelara started 2017-04-07, Renew Life 80B, S. Boulardii

jerseyguy1
Regular Member


Date Joined Jun 2017
Total Posts : 95
   Posted 6/26/2017 2:19 AM (GMT -6)   
Imagardner2,

Can you tell me what you eat?
Apriso, VSL3-DS, n-acetyl glucosamine, coagulans, home made bone broth, marine collagen 1&3, collagen 2 from chicken sternum, glucosamine and chondroitin, tryptophan, n-acetyl tyrosine, cysteine, zinc picolinate, quercetin, ubiquinol, r-ala, magnesium, iron, boron, vitamin d3, vitamin k2 mk4, cod liver oil, complete E, dessicated liver, bee propolis in honey, selenium, alcar, hyaluronic acid.

Scarecrow
Regular Member


Date Joined Aug 2010
Total Posts : 289
   Posted 6/26/2017 4:48 AM (GMT -6)   
CCherbal and psylium powder. Been taking this for 7 years now.
I have had this disease for 25 years now. Tolerable at first as I went into remission with drugs like prednisone and finally Remicade. In 2009 all of these drugs stopped working for me and my UC became much worse. I began taking Chinese herbs have never looked back. Good bye prescription drugs! Daily regiment of supplements:

CCherbal
Metamucil/Psylium Seed Powder mix
Probiotics

st_uc
Regular Member


Date Joined Mar 2014
Total Posts : 186
   Posted 6/26/2017 5:38 AM (GMT -6)   
Have you had any side effects from CCHERBAL? WHat is the dose you use?
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